“Do I Have Autism?”

As the Super Bowl turned into a rout, I lost interest in the game. I got my laptop and began browsing a couple of my favorite blogs.

Kai came over next to me to see what I was looking at. I was on my friend Betsy’s blog and she has a photo in the sidebar of a person’s hand holding the autism puzzle piece.

“Do I have autism?”

The question took me by surprise.

We have a magnet of the autism ribbon on the back of our car. Over the years we have had numerous autism books and publications in the house. My wife and I have had conversations about autism while Kai was sitting at the kitchen table with us. Not once had he ever asked about autism.

I told him that, yes, he does have autism.

“Is it a bad thing?”

Oh boy, is that a loaded question. I know that many grownups get upset about how people answer this question. I was just concerned about saying something that might make Kai feel inferior.

I told him that it wasn’t a matter of it being a good thing or a bad thing; it just is.

The moment I said it, I knew it wasn’t a particularly good answer. It surely wasn’t going to satisfy him.

He asked the question again, but I couldn’t think of a better response. In my head I started cursing the Seattle Seahawks. It’s their fault for putting me in this position.

Kai then mentioned a boy in one of his special needs activities.

“A___ has autism and he can’t talk. He just grunts.”

“But I can talk really good.”

Yes, autism is a wide spectrum, I explained. It affects people differently.

He mentioned another boy.

“C______ sometimes gets too close and violates my personal space. He doesn’t talk either.”

He then had me click on the puzzle piece which took us to the Autism Speaks website. I pointed out the stat that said that autism affects1 in 54 boys.

“That means that if you had 54 boys, I would be the one with autism!” he said enthusiastically.

I was trying to think of what to say, but before I could come out with something Kai said he had to go to the bathroom. When he came back his mind was on something else.

So I totally failed to take advantage of the opportunity to have “the talk” with him.

But it is good to know that he now has an awareness of his autism. It opens up the opportunity to talk to him about it more. Hopefully I will be better prepared to have that conversation the next time.

Right now I kind of feel like Peyton Manning. I didn't take advantage of my big moment.

I’m not sure if Peyton will get back to the Super Bowl. But I’m pretty sure I’ll have another chance to have a talk about autism with my son.

I better start preparing.

Babble’s Tribute to Autism Dads

Autism Wonderland has long been one of my favorites blogs. When its author, Lisa Quinones-Fontanez, writes about her experiences raising her son with autism, it is with such clarity that you feel every anxiety she has, suffer along through all of her challenges, and celebrate with her all of the triumphs.

As a big fan of her writing, I am especially honored to be included in her Father’s Day tribute to Autism Dads that she wrote for Babble. Check it out here: Let’s Hear It For The Autism Dads!

And for those of you here from Babble for the first time, thank you for visiting! Here are a few posts that may give you a little background on our family:

Recalling Our Wedding: The story and photos of day when my wife and I married, and the three of us became a family

Mainstream vs. Special School: Our heartbreak when my son couldn’t stay in our neighborhood school, and what resulted

That’s Impossible!: Sometimes, just when the challenges seem overwhelming, something happens to validate your efforts

How Do You Explain Autism to Your Son?

Are you ready for “The Talk?”

Today’s Patch column recounts recent events that have me preparing to discuss autism with my son. Click here to read.

It’s a Hard Knock Life - When You Can’t See the Play

So, what happens when you take your son with autism to a play, and it turns out that he can’t see much of it or understand what it is about?

Kai’s 10-year old cousin Lucy was making her acting debut this weekend in a kids’ production of the musical Annie, with all roles played by elementary school students. Lucy was playing one of the orphans.

Lucy is an awesome kid. She’s sweet, smart, and talented. And she’s rather patient and big sisterly with Kai on the occasions they are together, and Kai likes her a lot.

So of course we wanted to see her perform.

We had taken Kai to a few plays before. It is hard to get him to sit still, and he isn’t always as quiet as he should be, but he likes music and will generally sit through a play nicely enough if it has a fun story and good songs.

And I thought that Annie would qualify in that regard. (I know that I have to turn in my man card as I admit that I loved Annie when I saw a touring company perform it years ago.)

So, on Saturday afternoon, we went to the church where the play was held.

The play was performed at the front of the church, on ground level, the same level as the audience. This church, like most, does not have theater seating. So, even though we were only in the ninth row (Kai counted, of course), we could not see a whole lot of the young, small performers. Instead, we mostly saw the back of the heads of the people in the rows in front of us. If we craned our heads, we would see glimpses of some of the performers.

Besides not being able to see much of the play, it was difficult to follow the dialogue. That was to be expected – after all, these are kids, most of who were acting for the first time, and not exactly like professionals when it came to projecting their voices. In addition, with children playing both the kids and adult roles, it was sometimes difficult to distinguish the characters. If you weren’t already familiar with the story, I think it would have been really tough to follow the plot.

Put it all together and it was not a conducive environment for Kai.

He fidgeted throughout. He talked quite a bit, except during the songs. My wife shushed him. I tried to hold him close and keep him quiet.

At nearly 8 years old and 65 pounds, he is long past the time when he should be sitting on his parents’ laps. But I had him on mine, mostly so I could keep him close and under control as much as possible.

I was somewhat thankful that his grandfather, rather than strangers, was sitting in front of us. I was afraid to turn around to see who was in back of us.

We almost left several different times, but each time Kai quieted down for the moment, saying he wanted to see the whole play. I think he liked the songs, and his cousin.

And so we stayed.

From what I was able to see, Lucy was awesome.

At the end Kai joined in the big round of applause for the young cast.

As we were walking out, we passed a table where we could write messages for cast members. My wife and I wrote notes to Lucy telling her what a great job she did. Kai simply wrote, “You’re cute. Love, Kai.”

When I later thought of how hard it was for Kai to understand what was going on during the play, I thought that it was actually remarkable that he wasn’t even more restless. So, though it was really difficult, it wasn’t a complete disaster either.

When I look at it like that, I might be inclined to agree that the sun really will come out tomorrow.

Am I Prepared to Talk to My Son About Autism?

On our last visit to the library, a children’s book that was displayed on the shelf caught my eye: Nathan Blows Out the Hanukkah Candles.

Hmm, that’s an amusing title, I thought. In the past, Kai has wanted to blow out the Hanukkah candles so he would probably relate. And a quick look through the book showed that it had pictures that would help to keep Kai’s interest. As Hanukkah had just begun, it was very timely. And I thought perhaps that it would help Kai learn a little more about this holiday.

So, I checked the book out and brought it home to read with Kai. And, the other night, he picked it as our bedtime story.

As I began reading, I realized that the title character was a boy with autism. I had unwittingly chosen a book that might spur a discussion with my son about autism.

The story is told from the perspective of Jacob, the younger brother who is embarrassed by his older sibling with autism. Nathan repeats himself constantly and recites the 50 United States in alphabetical order. His mother reminds Jacob that Nathan’s brain is wired differently. But, Jacob is mortified when, in the presence of his new friend, Nathan blows out the Hanukkah candles during the menorah-lighting ceremony.

In the end, the boys’ parents deal with the situation in a patient, creative, and loving way that embraces Nathan and teaches acceptance.

It was a wonderful story.

But, I was uncomfortable reading it with Kai. We haven’t told him that he has autism. And I wasn’t sure that I was prepared to have that discussion now.

I was worried that the book would spur questions from him. Lately, he has frequently been asking me to explain what words mean. What would I say to him if he asked what ‘autism’ is? Would he know that he has autism? How would I explain that to him?

Well, for now, these are hypothetical questions. Kai did not ask any questions that night. I don’t know how much of the story he understood. I really don’t know if he noticed any resemblance between himself and Nathan. And, I was too chicken to question him about it.

So, I’ve got a little more time to think about it.

But, I know one day we will have this talk. And I’d better be prepared.

Have any of you had this talk with your kids? What did you say? How did they react? How old were they when you had the discussion? What advice do you have for other parents?

Would I Take Away My Son’s Autism?

I’ve seen a lot of discussion around the hypothetical question, “If there was a pill that could take away your child’s autism, would you give it to him?” Jillsmo over at the Yeah, Good Times blog recently tackled that question with a thoughtful response titled “Yes, I Would.”

Upon first reading her post, my immediate response was “of course, I would do the same.”

Of course I would want my son to stay regulated, and not engage in self-injurious behavior.

Of course I would want to take away his anxieties.

Of course I would want him to be able to fully express all the marvelous thoughts he has in his head.

Of course I would want him to be able to make friends and participate appropriately in social situations.

Of course I would want him to eventually live independently and to have a productive life.

Of course.

But as I thought about it some more, I realized that there was more to it than that.

Besides all of the terrible things, how else is autism affecting my child?

Would he have his incredible math skills if it weren’t for autism?

How much of his quirky, but oh so loveable behavior, is due to his autism? Would he still be interested in things like the periodic table?

Would he ever ask for hugs again?

For a long time after Kai was diagnosed, I tried to figure out which of his characteristics and behaviors were typical of boys his age, which were caused by autism, and which were particular to his individual personality, regardless of autism. After awhile, I stopped trying to figure it all out. I decided that it didn’t really matter. It was all Kai, whether it was due to his autism or not.

When it comes to hypothetical questions like these, I feel the same way. Until we learn more about autism, until we really know not only what causes it but also what are all of its effects, until such a magic pill is real, it does not really matter.

I love my son for who he is. And, nothing will change that.

If the Royal Couple Had a Child With Autism

The world has a new princess today. She’s a beautiful bride. And, from all indications, she seems like quite a fine young woman who will represent her country well.

Seeing the young couple, I couldn’t help but feel a sense of optimism about the world this morning. It’s a silly feeling, I know, as nothing has really changed for the rest of us. But there’s something about a wedding that brings hope to all who are touched by it.

Though when my thoughts came back to the reality of my own life, I started to wonder, what would happen if the Royal Couple had a child with autism?

Forgive me if that offends any of you. On wedding days, we are not supposed to think such thoughts, are we? We are supposed to think only of ‘happily ever afters.’ After all, how many of you thought of the possibility of having a child with autism on your wedding day? Not many, I presume.

And yet, I can’t help but wonder what it might be like if Kate and William had to deal with the same challenges that we deal with every day.

With all of the paparazzi and media outlets these days, it would be difficult to maintain privacy. How awful would it be to deal with all of the emotions of learning about your child’s autism with the whole world watching? And think about reaction on all of the social networks. They would be abuzz with people commenting about every move. Everyone would be second-guessing diets and medications, therapies and treatments.

“Why are they doing Floortime and not ABA?” “Why are they wasting their time with that special diet?” “Why are they doing all of those quack treatments?”

But after the couple began to accept their circumstances, I wonder if they would embrace the opportunity to share with the world their experiences in raising a child with special needs? It certainly would build awareness better than any organized campaign ever could. A Royal Child With Autism would personalize the disability for those who have yet to experience it in their own lives. And then maybe, this still-hidden disability would not be as hidden.

Ah, but those thoughts are really for another day, right?

Best wishes to the Prince and his new bride. May you be happy together.

Doesn’t Look Like Autism

I don’t know if I should be happy or mad when people say that my son doesn’t look like he has autism.

On one hand, I suppose it’s a good thing. After all, for a time after he was diagnosed, I don’t think too many people would have made such a remark. Back then, he didn’t speak or make eye contact so his autism was more readily apparent. Nowadays, he can be quite the chatterbox – though usually just when talking about elements or numbers – and because he doesn’t show some of the other stereotypical signs of autism, he can seem like a typical kid at times.

But, that is true of many kids on the spectrum. And so, autism is often an invisible disability. And it makes me upset when people don’t realize it, as if autism has to “look” like a certain way.

But, about the time I’m jumping on my high horse and expressing frustration over others’ insensitivities, I realize that I, too, sometimes don’t see the autism in my own son.

Take last night for instance. We were having a great evening. I was helping him with his homework and he was doing it nicely. All was well.

But then I discovered a mistake on one of his math problems. I suggested that he check his work. He started to get frustrated. Without just telling him the answer, I tried to explain where he went wrong and what he needed to look for.

He didn’t seem to pay any attention to me. I tried to get his attention. He didn’t respond. His mind was wandering off elsewhere. After awhile, I got frustrated. He got upset. I ended up yelling at him to listen to me. He ended up biting a hole through the sleeve of his shirt.

If his autism was more apparent, perhaps I may have been more patient with him. But sometimes he seems so much like a typical kid that I, in that moment, forget about his autism. I forget that it might be contributing to his inability to focus or stay on task. I forget that I need to be patient and perhaps take a different approach.

And so, I’m not going to throw stones at others who don’t see or understand my son’s autism. I need to do a better job of that myself first.

Our First Family Vacation

Our seemingly endless winter has us thinking about vacations. Spring Break is not too far off and, hopefully, summer will eventually arrive as well.

Vacations are supposed to be fun and relaxing, a getaway from all the stress of daily life. But, going on vacation with a child with autism can be even more stressful.

Until last year, other than trips to visit family, my wife and I had not taken a real vacation with our son.

When Kai was younger, especially, it felt risky being in public with him for long stretches. We may not have known when or where something would happen to set him off, but we felt it was just a matter of time.

Often, his fuse would be lit by having to wait. And on vacations, there are plenty of occasions that require a lot of waiting: Waiting in the security lines at airports; waiting for food to be served at restaurants; waiting to get on rides at an amusement park.

By early last year though, he had made progress in a lot of areas. He was able to wait longer. He did not get upset as often.

And so, last spring, with his grandparents wanting to take him to Disney World, we decided to go.

The short version of the story is that we had a great time. Kai enjoyed the 3D movies the most, but he enjoyed all of the rides he went on as well. But, being Kai, he also had as much fun riding the elevators and counting the floors in our hotel, and studying the maps of all of the different theme parks that we went to.

We tried to prepare for the trip as best we could. Here are some of the things that may have helped things go relatively smoothly:

• Create daily schedules: Kai likes to know what is planned so he can organize the day in his head. So, my wife created a schedule for each day’s activities. We were able to set expectations and prepare him for what was coming.

• Get the special needs’ pass: Disney makes accommodations for those with special needs that minimizes the time waiting in lines for attractions. Without the special pass, there is no way we would have even considered going to such a popular place. It is unfortunate that this benefit remains unique among major family vacation destinations.

• Avoid overload: Our typical day involved going to one of the parks right after breakfast, but coming back to our hotel room for lunch. Then, we would play in the hotel pool and relax in the room before heading back out to a park later in the afternoon. We pretty much saw every attraction we wanted to (thanks to the pass), and felt far less stressed than we would have if we have tried to stay out at the parks all day long.

• Minimize time in restaurants: We were able to stay in a suite that had a full kitchen and eating area so that we could eat all of our meals there instead of in restaurants. No restaurants meant no waiting for a table, no waiting for food, and no resultant meltdowns.

• Ship the things you need: Kai takes a lot of supplements and is on a gluten-free casein-free diet. Rather than carrying his supplements with us in our luggage and spending time trying to find stores that carry special foods down there, we shipped almost everything we needed to the hotel ahead of time. With airlines charging for every piece of luggage these days, we may have even saved money by doing it this way.

• Stay nearby: We stayed at a hotel that was near the Magic Kingdom, and a monorail ride away from Epcot. Doing so reduced the time waiting for buses and traveling to the parks. We also were able to see the nightly fireworks from our room on the nights we decided not to stay to see them in the park.

• Go with grandparents: As my wife’s parents live on the other side of the globe, we don’t get to see them too often. So, it is always a special time when we get together. Getting to share the experience of their grandson’s first trip to Disney World was an exceptional treat. And, it never hurts to have an extra caregiver or two around on a trip like this.

Now, I don’t want to leave you with the impression that everything went perfectly. There was one incident where Kai got very upset while we were at the Magic Kingdom. It started when he may have gotten something in his eye. When we couldn’t get him settled down quickly, we decided to go back to our hotel room. I may still have a scar from where Kai was biting my arm while I held him as we rode the train that goes around the park back to the entrance. But, once we returned to the haven of our room, he calmed down and was fine.

That aside, the trip was everything that you would want a vacation to Disney World to be. I had heard others describe the wonder in a young child’s face when experiencing it for the first time. It warms my heart that I got to see that same expression on our son’s face, too.

Rigidly Determined to Help My Son

My wife was at school to witness our son’s latest major incident.

It actually happened right after a big success, when he gave a great presentation for the Black History Fair the other day. The fair ended shortly before what normally would be the end of the school day. Parents who attended the fair were given the option to take their child home right away, or have the child stay a few more minutes until class was formally dismissed.

Kai said he wanted to stay and finish out his school day so my wife was allowed to stand in the back of the classroom.

One of Kai’s classmates, however, did not stay. That boy’s mother decided to take her child home. Another woman wanted to take a picture of her grandson next to the display he had made. And that was enough to set off my son.

Kai couldn’t stand that all of his classmates were not in the classroom as the teacher started to wrap up the day. He started screaming for the boy who was having his picture taken to come back into the room. And although that boy hurried back, there was no calming Kai down when the other boy went home.

My wife tried to settle him down. But, when he kept screaming and disrupting the class, she let the teaching assistants handle it. Kai continued his tirade, using threatening language and trying to hurt the TAs. After hearing about all of his incidents at school, it was the first time either of us saw it first hand.

Kai, like many kids on the autism spectrum, has issues with rigidity. He likes things to be the way they always are. If there is a change, even one that seems minor to most of us, it can lead to a meltdown.

It is hard to understand why a classmate leaving school a few minutes early should cause such a huge eruption. And because it is difficult for us to relate to, it can be easy to get frustrated with our son. We’ve tried to teach him to be less rigid. We try to prepare him whenever there will be a change in his routine. Why can’t he adjust? Why can’t he learn?

But when I start to feel the frustration, I need to remind myself that I can’t be frustrated with my son. My frustration should be with autism. Autism is why my son is inflexible. Autism is why he gets so upset over little things.

And so, my son doesn’t deserve my frustration. He deserves my patience, my love, and understanding. But, what he needs most of all, is my determination to keep working hard to help him overcome his disability. And, on that, I will be rigid.

A Tearjerker Movie and My Son’s Difficulties with Social Skills

My wife and I watched the 1970s’ movie Ice Castles on dvd the other day. Ice Castles is the fictional story of a young figure skater who seems headed for the Olympics until tragedy strikes. Like many other women who have seen this film, my wife cried as she watched it.

* * * * *

All of us have brain cells called mirror neurons. These neurons were first found in a monkey about 20 years ago. Italian scientists, led by Dr. Giacomo Rizzolatti, accidentally discovered that that the same brain cells that fired when a monkey brought a peanut to its mouth also fired when the monkey watched humans or other monkeys bring peanuts to their mouths. That meant that seeing something has the same effect on these mirror neurons as actually doing the action.

The implication for humans is that mirror neurons are linked to things like empathy. In an article on the topic in the NY Times, Dr. Rizzolatti said that humans are able to understand “not just the actions of others, but their intentions, the social meaning of their behavior and emotions.” He went on to say that “mirror neurons allow us to grasp the minds of others not through conceptual reasoning but through direct stimulation. By feeling, not thinking.”

And so, when my wife cried while watching the movie, it was because her mirror neurons allowed her to have the same feelings as the character she was watching.

In addition to their role in empathy, mirror neurons are said to play a part in developing language and in our ability to imitate and learn from the actions of others.

I bring up all this because some researchers have found a link between mirror neuron deficiency and autism. The thinking is that these deficiencies lead to disabilities in social skills, imitation, and empathy among those with autism.

That would explain some things about my son. It would explain why he has trouble with understanding and responding to social cues. It would explain why he doesn’t seem to learn social skills just from being in the same classroom as typical kids. It would explain his difficulty in imitating others.

However, the research on mirror neurons is not conclusive, and a recent study challenges the connection to autism. So, for now, it is just something intriguing to think about.

While I’m pondering all this, I’m off to find a movie that will make my wife laugh instead. Any suggestions?


For those of you interested in reading more about mirror neurons, you may want to check out these articles:
The NY Times article, “Cells That Read Minds”
The transcripts from the PBS Nova show on mirror neurons
The New Scientist article on the study that challenges the link with autism

Would Tiger Mom Be Able To Raise a Child with Autism?

Amy Chua’s new book, “Battle Hymn of the Tiger Mother,” has created quite a stir the past few weeks.  Her memoir of raising her children “the Chinese way” has drawn much criticism over the harsh methods she used, and sparked debate on the relative merits of Asian versus Western methods of parenting.

She illustrates her toughness in one notorious incident where she describes how she once rejected her young daughter’s homemade birthday card, saying she wanted “a better one – one that you’ve put some thought and effort into.” 

Another example is the time when she forced her then seven year old daughter to play the piano for several hours until she mastered a particularly difficult piece.  Tiger Mom yelled, threatened, and called her daughter names.  She said that her house became a war zone as she refused to let her daughter get up from the piano, even to eat or use the bathroom.  Eventually, the girl did successfully play the piece, and felt so good about doing so that she was beaming and wanted to play the piece over and over again. 

Ms. Chua argues that letting her daughter give up would have hurt her self esteem.  Instead, her daughter gained confidence by accomplishing something she thought she could not do. 

She goes on to say that Western parents are lax, and more likely to try to build self-esteem by praising a child, even for a mediocre performance, whereas Chinese parents do so by setting high expectations and then forcing their children to work hard to meet those expectations.  She also believes that parents need to be tough about overriding their kids’ desires as parents always know what is best for their children. 

Being Asian-American, I have some personal insight into the Asian approach.  As with the Tiger Mom, my parents set high expectations for me and held me accountable.  From the time I was in elementary school, a grade less than an “A” was unacceptable with my parents.  I still recall the time my fifth grade teacher asked me how my parents had reacted to my report card.  I think she expected that they would be full of praise as I had gotten mostly As except for one B.  I’ll never forget the look of horror on her face when I told her that I was grounded for a month.

But when it comes to my own parenting style, even before I had a child, I was determined that I would use a more Western approach than that of my parents.  I believed in the value of teaching a child to make good choices because it is the right thing to do, not out of fear of being punished. 

Of course, once I actually became a father, I learned a lot about parenting.  And being the father of a boy with autism, I have really been challenged.

But all this commotion over the Tiger Mom has me wondering how she would do if her child had autism.  Would she be able to handle it?  Would her methods be effective? 

I think she might have to adjust her methods:

Set high expectations, within reason:  I have no problem with setting high expectations, even for a child with autism.  But these expectations should be set within the context of each child’s capabilities.  I believe that every child can be taught to always try to do their best, and that it is up to us as parents to do this. 

I think the bigger problem for Tiger Mom would be in dealing with her own expectations.  Would she be able to accept that her child will not become a prodigy no matter how much she pushed, prodded, and punished them?  Moms (and dads) who are far less demanding than Tiger Mom struggle mightily with this.

Understand, not command:  Tiger Mom does not strike me as the understanding type.  But, a child with autism behaves differently than a neurotypical child for a number of reasons – they may be sensory-related, neurological, or biological.  Regardless of the reason, the differences are such that children with autism need to be taught things that come naturally for most neurotypical children.  Commanding kids to do something they are not able to do is futile.  A parent needs to have an understanding of why their child with autism does what he or she does.  Only with understanding can they teach their kids the things they need to learn.

Teach, not taunt:  Kids with autism need to be taught so many more things than typical kids.  Seemingly little things like learning how to blow their nose can be difficult.  Major things like learning how to communicate, and how to cope are constant, ongoing processes.  You can’t spend hours haranguing your kids to become piano virtuosos when there is so much else to work on.  Also, patience is essential.  And this is where I think Tiger Mom would have to really change her ways.  Kids with autism are more likely to feel inadequate or insecure as it is.  They don’t need their parents piling on by calling them names. 

Soothe, not provoke:  While Tiger Mom may have been comfortable in making her house a war zone when forcing her daughter to play piano, she never had to deal with an autistic child who went from zero to sixty in one second, and then stayed in a state of eruption for a very long time.  I’m willing to bet that even Tiger Mom would opt to try to de-escalate matters after going through that a few times.  That is not to say that your child should never have to pay any consequences for their poor choices.  There are times when you will take a stand and deal with the upset it causes.  But, there will also be plenty of times when your child may have a meltdown when it has nothing to do with setting a limit.  No matter the cause, it does not help to pour gasoline on an already-explosive situation.  Your child needs to calm down before he can be taught anything.

Eastern methods? Western methods? Both!:  When my son was two years old and not talking or responding at all, we began an extensive program of ABA therapy for him.  ABA is somewhat akin to the Eastern approach to teaching in that it relies on repetition and regimented drills to teach kids with autism things that other children learn naturally.  In my son’s case, as with many others, it worked.  He learned quite a lot.  But, one of the drawbacks of the approach is that speech and communication can be somewhat robotic.  The child often gives the response he has been taught, rather than one that comes spontaneously.  But, when you consider that previously our son did not speak at all, that seemed acceptable. 

After a time, though, we went away from ABA to a DIR/Floortime model of therapy instead. This is a far less structured approach. There are no drills. Rather, the basic tenet is to follow the kids’ lead in play. The belief is that this will lead to interactions and more natural communication. This Floortime approach also worked with our son as he interacts more than ever and his speech is not robotic at all now. Somehow, I have a hard time picturing Tiger Mom doing Floortime with her kids, especially the part about letting them lead.     

Conclusion:
So, what do we make of all this? Would Tiger Mom be a good parent of a child with autism?

We can debate Tiger Mom’s methods, but I think almost all would agree that she is a very determined woman who wants what is best for her children. If she did have a child with autism, I think that quality would serve her well and help her to persevere. But, could she handle having a child with autism? Wouldn’t she have a lot to learn? To that, I ask, how many of us felt truly prepared to be the parent of an autistic child?

Imagine That

Lack of imaginative play is often cited as one of the characteristics of autism. But, I wonder if there is a difference between having the ability to do what most people would consider imaginative play, and actually having a good imagination.

I happen to think my son is one of the more creative people I know. He is certainly much more creative than I am. However, he doesn’t express his creativity in the way people traditionally think.

Kai does not often engage in make-believe play the way most kids do. He does not play doctor or pretend to be an astronaut or become Harry Potter like other kids might. He does not emulate sports stars or TV characters.

But he is constantly coming up with new ideas and doing things differently.

Last week, for instance, he created “soccer bowling” in which we kicked a soccer ball down our hallway to knock down bowling pins.

This past weekend, he grabbed all of our beach toys and we went out to the “snow beach,” a.k.a. our front yard, to build snow castles. His most creative moment came after we were finished building it when I told him that I did not want him to knock down the castle. For Kai, the best part of making a castle is knocking it down. So, he inventively told me that our creation was no longer a castle. It was, he said, nine Hanukkah candles. Then, he went to each mound of snow, the “candles,” and methodically crushed them to simulate the candles burning down.

Sometimes it is hard for someone like me who is much more “by the book” to keep up with Kai’s creativity.

For instance, he often likes to add his own rules on top of the regular rules of a game. So, when we play Crazy Eights, for example, anybody who plays a Crazy Eight card will have to perform some task that Kai has chosen for that game. I’d rather just play the game the regular way, but will follow his lead and go with the flow for him.

At times, though, his creativity seems to be just an excuse for infusing his love of numbers into a game. In Crazy Eights, as each card is played, he punches in all the numbers into a calculator and adds it up as we go along. The winner is awarded the final total of points from all of his addition.

About the closest Kai comes to typical imaginative play is being the teacher to his Ugly Doll students. Lately, he is enjoying teaching his Ugly pals how to build Electronic Snap Circuits, the science toy that he got for Christmas.

But, often, even this imaginative play becomes atypical. Instead of teaching the Ugly Dolls, he would talk to the electrical parts themselves as if they were real. “Hello, Mr. Diode.” “Come here, Mr. Lamp Socket.”

So, I ask, is that weird, or is it creative? Is it any more silly than a typical child talking to their inanimate doll or stuffed animal? Should we be correcting him, and let him know that you don’t talk to lamp sockets? Or, is it indicative of how creative his mind is?

I wonder if Picasso’s parents ever asked those questions.

A Rewarding Meal at a Mexican Restaurant

When our son was first diagnosed with autism, we were very fortunate to find Mary, a wonderful therapist who worked with Kai and directed our home therapy program. For awhile, Kai was doing 30 hours of intensive ABA therapy every week. Much of what I learned about dealing with a child with autism came from observing the work that Mary and her fellow therapists did with Kai.

Prior to becoming a parent myself, I was not a fan of the “bribery” method of getting your child to do something. It just felt wrong to have such a direct link between behavior and reward. Shouldn’t a child learn to do something just because it is the right thing to do?

And yet, one of the components of ABA therapy is to reward the child for positive behavior. When Kai first started ABA, the reward could be something as simple as getting to play with an attractive, new, sparkling object if he responded to Mary’s command to “come here.” When we saw that Kai actually responded, something we hadn’t seen before, we understood the power of positive reinforcement.

As time went on, the reward system was adapted as Kai’s abilities changed. When he mastered a behavior, the reward was faded. When he showed he was capable of doing more, he had to work harder before he was rewarded.

I grew to see that this type of positive reinforcement was not the same as the “bribery” concept that I thought would be so distasteful. If done properly, the focus still will be on teaching the child right and wrong, and not doing something just for the sake of a reward. Oftentimes, Kai’s reward consisted of enthusiastic praise for a job well done, rather than something more tangible. For a kid who soaked in praise, this was actually the best reward of all.

While my son no longer does ABA therapy, he still receives a lot of positive reinforcement for maintaining good behavior. As I mentioned before, his school uses a point sheet, among other things, and gives privileges to kids who perform up to expectations.

At home, in addition to continuing to regularly praise him when he does well, we sometimes will provide a special incentive for Kai. Last fall, when he was having major incidents at school nearly every week, we set up a reward system for him where he could earn a prize for a good, incident-free week of school. After we set up the program, he put together several good weeks in a row and finally made it to Level 2 at school.

With the onset of the new year, we had not intended on continuing that incentive. We thought we would see how he did at school for a few weeks before we decided whether or not to start it up again. But, we forgot to tell Kai that.

When he came home from school last Friday, he was filled with glee as he said he had another good day at school and that completed a good week. Therefore, we would go to a Mexican restaurant, which was to have been the next reward on the list. I tried to explain to him that we weren’t doing that right now. But, when my wife went to pick him up at school yesterday, the aide who brought him out said, “Kai was so happy at school today because you are going to a Mexican restaurant tonight. That is so nice!” When my wife relayed that story to me, we decided to go to the restaurant after all. I was a bit reluctant, but he did do a good job at school last week.

So, we went and…

Kai had a fabulous time. Before we went, we reminded him that he had to use his quiet voice. He got excited a few times, but he was mostly very well behaved. When the waiter came to take our drink orders, Kai was already telling him that he wanted a taco, and corn chips and salsa. And, though he got up from the table and walked around a few times, he ate the entire taco nicely, and an extra one, too, as well as most of our big basket of chips. He even waited somewhat patiently for Mom and Dad to finish eating. It was the best experience we ever had with him at a restaurant.

As we were leaving, he kept saying, “This is the best restaurant I’ve ever been to!”

It turned out to be a great reward for him.

But, you know something? Seeing him so well behaved and happy was a huge reward for me, too.

He Slept? He Slept!

My son slept through the night last night.  That makes three nights in a row. 

For most kids, that is no big deal.  But, as I wrote before, Kai frequently wakes up in the middle of the night.  Tests have shown that he has very high glutamate levels which can result in disruptive sleep and bring on high levels of anxiety.  Over the past three years, it has been rare for him to sleep through the night more than two or three times a month.

On those occasions when he does sleep, the next morning my wife will ask me if he really did sleep through the night.  Since it is such a rare occurrence, we can hardly believe it. 

This current three-night streak is the most consecutive nights Kai has slept since mid-October when he had a stretch where he slept through the night for five nights in a row.  That was his best streak since he was three years old.  The October streak occurred just after we had started seeing an Applied Kinesiologist to work with Kai, so we had hopes that his sleeping issues were finally solved.  But, soon after that, his sleep patterns reverted back and he’s had only about one good night of sleep a week since then. 

We’re not sure what might be causing this latest good period of sleep.  We recently stopped giving him a supplement which relieved adrenal fatigue. On yesterday’s visit with Kai’s DAN doctor, he reported that Kai’s cortisol levels have rebounded a bit so additional adrenal support may have stimulated his adrenaline too much.  So, the supplement could have been contributing to his sleep issues.

We shall see if the effects last.  In the past we have had other periods where his sleep improved for a few nights, only to return to sleeplessness again.

But, for now, I’m not going to lose sleep over how long this may last. 

Seat Belt Stress

Sometimes it feels like there is always something that bothers our son that wouldn’t bother anybody else. Lately, whenever I buckle Kai’s seat belt, he complains that it is not tight enough.

Of course, I always make sure that it is very tight, but no matter, Kai still seems paranoid that it should be even tighter. He gets upset and pulls on the belt himself to try to tighten it more. But it doesn’t tighten more since it is already very tight, and that only gets him more upset.

There have been times in the morning, after I strap him into the cab and close the door, that the cab driver motions me back over to check on his seat belt as he complains to her that it is not tight. I go over, give the already tight belt another tug, and assure him that it is very tight.

What is worse, though, is when, after I start driving, Kai starts screaming about his seat belt. Since I’m driving, there’s nothing I can do except reassure him that the belt is secure. Often, that is not good enough for him and he stays in a state of distress until we reach our destination. It makes for a very unpleasant drive.

These days, I proactively assure him that the belt is tight every time we get in the car. He still asks, though, “Daddy, is the belt tight?” I reassure him that it is.

I don’t know why this has become such an issue lately. I know that with his sensory issues, he craves deep pressure, so perhaps this is an extension of that feeling. But, I’m guessing it has more to do with some type of anxiety he is having, a feeling that he does not feel safe. I don’t know what brought it on and am not sure how to reduce it.

In raising a child with autism, I am learning that while we often focus on big issues like learning to socialize and maintaining a safe body, it is these seemingly little things that frequently cause so much stress in our daily lives.

Yes, similar to yesterday, this is another example about small irritations becoming a big deal.

I think I need to meditate some more.

Working at Playing

With all this time off during winter break, most kids are probably spending a lot of time playing with their friends. It’s something that we would love for our son to do as well, but that doesn’t happen too often right now.

Like all kids with autism, Kai’s social skills are deficient and he does not play well with other children. In addition, he seems to have little interest in playing with other kids, preferring instead to play with me and Mom. And so, my wife, especially, worries that Kai will grow up without having any friends.

Over the years, we’ve set up play dates for Kai with various other children. We quickly learned that these need to be facilitated in order to have any value at all. Unlike with typical kids, you cannot just put a child with autism together with another child and expect them to play together.

Instead, a successful play date will often involve some type of organized activity with a shared goal. A skilled facilitator can help the kids learn how to take turns, communicate, and work in tandem while developing skills such as sharing, compromising, learning to think on the fly, reading social cues, and dealing with their emotions.

When Kai was younger and wasn’t in school all day, he did his ABA therapy at home and it was easier to set up play dates. His lead therapist for many years, Mary, was wonderful at facilitating activities between Kai and whatever peers we could find. But, over the past year, his schedule changed and Mary moved away and we are finding that it is much harder for us to facilitate play dates on our own.

One challenge is just finding peers that are appropriate play partners. While some neurotypical kids may potentially make good partners for our son, we are not very close with many parents. And, without a previously established relationship with the other parent, it is hard to overcome the possible stigma of having a play date end up badly because your son had some type of meltdown.

Parents of other kids on the spectrum are likely to be more understanding. But there, it is sometimes difficult to find a child that is a good match in terms of interests, temperament and abilities. And, while a trained facilitator may be able to pair two kids who have trouble with social skills, it is a lot harder for us parents.

When Kai was in school just half the day while in preschool and kindergarten, we had him in therapeutic groups that worked on these social skills. But, as he is now in school until mid afternoon, it is harder to find one that fits his schedule.

A few months ago, we thought that we found a good group for him. We brought him in to the psychologist and speech therapist who were running it so that they could make sure that he matched well with the other kids in the group. He passed the evaluation, but, after the first session, they said that he could no longer attend because his social skills were not up to par with the other children. Imagine the rejection we felt. Our son, who already has trouble fitting in, being turned away by professionals who set up a group specifically to help kids like him.

But, we’re not giving up. This is too important.

I just never would have thought that it would take so much work to teach a child how to play.

Autism Blog Carnival

I want to call your attention to a new special needs blog carnival. A blog carnival is a collection of posts from different bloggers on a particular topic. Today’s topic is autism and traditional and non traditional treatment options. Please check it out here.

And, if you are visiting Hanabi Boy from the blog carnival, welcome! Take a look around!

Thanks and come back soon.

Are Wii Wrong to Let Our Son “Box?”

My wife and I were just discussing whether we should let our son play the boxing game that is part of the sports package on the new Wii video game system he just got for Hanukkah. He is already inclined to hit, bite, kick, scratch and otherwise resort to violent acts when he is upset, and we were discussing whether this game would encourage him to act even more violently. My wife reports that a friend of hers does not let her boys play this same boxing game.

And so, when I read the article “Christmas presents you should not buy for children with autism,” my attention was captured when the author advised against letting kids with autism watch violent movies or play violent games.

The article was written by a special education teacher. She states that most children with autism cannot easily turn off what they see, and that they are unable to separate fantasy from reality. Instead, she prefers educational DVDs and computer CDs, and gives examples of each. She also speaks positively about the iPad.

I’m certainly not going to knock educational DVDs as I’m always looking for those on our weekly Dad-and-son visits to the library. And, the author makes a lot of great points about curtailing the violence our kids consume.

But, I’m not convinced that our son’s boxing game can be considered violent. I see it more as innocent, silly fun. There is absolutely no blood or gore, and it seems more like exercise than anything else. Besides, in the week that we’ve had it, we’ve had a lot more real social interaction with our son while playing with it than with most other activities.

Still, I’m going to monitor our son’s behavior over the next few weeks. And, if we see an increase in violence, I will reconsider my viewpoint.

What do you think?

These are the Good Old Days

Our son is having another pretty good week at school, but home is another story.

The lack of listening, or more accurately, the lack of response that we saw on our Thanksgiving trip is continuing, as is our battles over breakfast. Even worse, Kai seems more obstinate about not doing the things he does not want to do, thus challenging our authority. As he continues to be needy in many ways, this makes for a frustrating combination of seeing him lose his little boy innocence while not seeing a corresponding growth in his independence. It is times like these that really make us wonder about what our son will be like as he gets older.

At the same time, as we get older ourselves, I think we spend more time reminiscing about the past. Over Thanksgiving, at my sister’s house, we recalled Thanksgivings from when my nephews were young kids. They are both in college now, and when they were small, we could not imagine how they would turn out when they grew up.

The same is true for my son now. He is six years old and it is hard enough to imagine what he might be like when in another year or two, let alone when he is 18 or 20 years old.

The fact that he has autism may make it even harder to think of how he will be when he is older. Most parents can pretty safely assume that their youngster will change quite a bit as they grow up. But, my wife and I are not really sure if we’re kidding when we say that Kai will grow up to be a 200 pound version of the still mostly adorable kid he is now. When he is 16, will he still want to sit on our laps and ask for hugs? Will he still be wearing his clothes backwards? Will he still want me to chase him around before taking his supplements?

Yes, we know that he is actually making progress, but he still maintains a lot of his little-boy dependence on Mom and Dad, even as we notice that his body is growing.

Tomorrow, we are having family over for a Hanukkah celebration. I know that years from now, we will look back on these gatherings with fondness. But, I wonder whether it will be with the sweet nostalgia of the good old days before our son grew up to become an independent young man? Or, will it be a bittersweet look at the good old days of the past that did not lead to a brighter future? Either way, on days like today, I need to remind myself that these are the good old days.

“We can never know about the days to come
But we think about them anyway…

“These are the good old days
These are the good old days”
– Carly Simon